What do you want from HU ?

I have just caught up with the recent dispute about the content of HU.

As a result I am interested to hear from others what they want from the site.

My own reason for joining this community was to gain a greater understanding of what was happening to me following my diagnosis of RA and to lessen the isolation that I was feeling from the effects of my illness.

Initially I contributed quite a bit to the site and found it to be informative and interesting. Many members had aquired years of experince of managing RA and associated problems and it was useful to pick people`s brains. However I was always mindful of the fact RA affects us all differently. I felt at times some people projected their own experiences on others quite strongly. I did feel at times that there was a strong almost evangelical element. What I would describe as the stay positive brigade which it felt to me had little time and or respect for other conceptual frameworks/ responses to dealing with this illness.

Rather like there is one way of doing this and its my way.

I would like our site to be more open and respectful of each individual journey with RA. I would like us to be equals.

I think we should respect how people are feeling emotionally and allow them to express themselves without trying to influence and change how they feel that they are experiencing the disease. Sometimes I felt counselled when I had not asked for this and only wanted to be accompanied. This led me to wonder whos needs were being met.

Surely we can talk about our own experiences with some humility and with a willing ness to reflect on how others are currently feeling and coping.

I dislike prescriptive answers from so called expert patients.

No body is the same. Everybody has a unique mind, body and soul ( if you believe in the spiritual.)

This should be respected.

Regarding the controversial blogg. The only thing that would be wrong as I see it would be deliberating misleading others or being malicious or advertising services.

Anyone on HU has the absolute right to express their opinion about treatment for RA ranging from spiritual healing / EFT to biologics. It is fundamentally wrong to try and censor it.

Indeed it is important that it is aired so that the pros and cons can be debated freely and respectfully ( ie not calling views contrary to our own sick )

People can then draw their own conclusions and ultimately choose for themselves..

What do you think ?

15 Replies

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  • I understand the need to look at all ways to help us, but i don't like the way it has force one person to leave. This lady has been helpful to me when i have had really bad days.

    The item looked like an advert for the process, and though the lady had used it and found benefit from it, i got the impression she was being pilloried for it, this i found wrong. It helped her which i'm pleased about, but i also understand that there are sceptics out there, me being one. The item didn't once say that what they were proposing was free. I didn't feel that i wanted to even look at the site in case i started to get pestered from the company that was behind it.

    I'm glad that it has helped the lady concerned. My wish is that the lady doesn't stop blogging on this site, she never once pushed this idea onto anyone, i didn't even know that she used this method, so to pilloried like this was wrong.

    Sylvia.

  • Hi Sparkle and Sylvi. A very thoughtful blog from Sparkle and I agree with Sylvi's comments as well.

    Like others, I joined the group to find out as much as I could about RA and its effects, to chat to people who were also suffering with pain and discomfort, to find out how they managed to cope with it, to have a general chat about our lives without getting too serious (hence some of my blogs refer to the doings of my family and other animals - to pinch a well known phrase) to give support and friendship to others and to use my own experiences to help where needed.

    I did the blog on DLA so people knew what to expect when going through that horrendous process and knew where to turn for help. Rich (bless him) added to that with some helpful web sites. I feel this is a lot of the purpose of this forum, to help, advise and support from our own knowledge or quoting information from our rheumy nurses/consultants/GPs/pharmacists. Anything that tells us more about this wretched disease has to be good.

    Like Sylvi, I am concerned that lady got pilloried about the complementary method she used and which has obviously helped her. It may be that was not what was intended. Like all complementary therapies, it doesn't work for everyone but I feel she did her blog in the spirit of the forum, which is to share, inform and support. And I am also very sad that one of our well known members feels she can no longer contribute. This to me, is appalling. I learnt so much from her as to the progression of the disease as far as she was concerned and her cheerfulness (not to mention her stories of life, the universe etc).

    I will continue to use this forum as I find it very helpful and hope also that I have helped others by drawing on my experiences and my legal knowledge. (God that does sound trite) but you all know what I mean!

    Would be interested to learn views of others as to the purpose of this forum. I for one, would be very upset if people felt they couldn't continue to contribute. I feel I have made many friends on here. We may never meet up but it is good to know there are people out there who care.

    LavendarLady x

  • I agree that we all individuals and we all have benefited from this site.

    I have had some great advice and support from some lovely people on here. I like a mix of factual blogs and questions and the more fun light hearted blogs to lighten the load.

    Email internet is a cold medium. things can be misread etc.. it isnt the bast tool. Im better face to face..

    The only real experts are surely the rheumatologists.?!.

    However we all are experts in that we know our own bodies and how we feel, and surely the purpose of the site is mainly of share experinces and support.

    The people who have had this horrid disease for years get my upmost respect, as do those starting out and battling through the hurdles of medication like I have been!

    Live and let live.. we wont a peaceful helpful, supportive atmosphere.

    Alison x

  • hello Sparkle

    Normally i put my fingers in my ears and go lalala when a conflict is going on but i love this site and really want it to continue with all participants feeling that they have a voice. I agree with what you say - i love discussion, i love hearing other peoples opinions whatever they may be. It makes me question what i think and could i be too closed minded in what i believe. It might not make me change my mind but it does give me pause to think.

    I rely on this blog site - there are no groups in my region so it is a good opportunity for me to rant, complain and see how other people are getting on. I have got loads of support here, and i am not a member long, from people giving me sensitive advice from antidepressants to honest medical opinion re bizarre symptons to great lively and witty chats about alternative treatments among other things.

    I am also in my first year of diagnosis and it was people on this site who told me that this was the most difficult time whilst trying to find the right combination of drugs - that in itself has caused so much less stress as i would have been wondering were they experimenting or what with me.

    And this site is my friend in those wee small hours when no pain killer works - to know that someone 200 miles away is in the same position is so comforting (for me obviously, not them) There should be a warning on those blogs that i write for they are oh so wallowing, self centred, analytical and all about me. I am continually surprised that people take the time to read and even better reply with advice or past experience.

    I didn't mind the EFT blog, it didn't encourage me to do it but because i was thinking along those lines myself, i could read other people's experiences and opinions and form a more comprehensive view of what it entailed. I don't want anyone selling stuff but experiences of the not so conventional are good as well.

    Right better go and get dressed I am unfortunately one of those individuals who practices the "why say one word when i could say twenty".

    Thank you Sparkle for giving us a safe space to offer an opinion.

    ps...Sparkle i think you said about the messaging service, perhaps that could be changed where the person can request they send a message instead of having the freedom to send it without permission.

  • As we have the facilities of both the HU and NRAS websites to use (assuming everybody is a member and when this is financially difficult perhaps free membership could be given) how about organising them to keep it strictly blogging on the HU site, it would seem most are agreed, the clearly very talented julie and lyn, amongst others, have written amazingly to entertain and inform us, and it would be a great pity if this fizzled out.

    The NRAS forum could then be used for general discussions, which others have said seem to have crept onto the blog area o HU, though there are wonderful examples of support and advice to be found currently on both sites, I for one would like to see just one set of general discussions because there are always interesting topics in both places and it gets a bit much.

    Then I would like to see the questions section on HU actually answered by a rheumatologist or rheumatology nurse, these could be filed and retrievable. By this I don't mean there is no longer a need for personal experiencesadvice to be discussed of course there would be but in the general discussions or blogging area.

    The isolating effect of having RA dissipates markedly when we come online, either being actively involved or just reading, so it is vital we don't lose the plot.

  • Hi All,

    I would just like to say the reason I joined the HU site was because I wanted to have more knowledge about RA from various different perspectives.

    I also felt extremely isolated when I was diagnosed, and very confused, and would have loved to chat at that dark time with someone else who had the condition.

    We will always have to rely on our own common sense when it comes to treatment and different therapies. I personally believe your Rheumatologists advise combined with GP & R Nurse support has benefited me.

    I have to say when I see a question that is outside my experience, I just move on and don't comment, all my comments and blogs I have just tried to be friendly and supportive and the only medication I feel quite strongly about is steroids and even at that I have always appreciated their help as a bridge while other more approp meds take effect.

    It can be quite intimidating, as many of the friends on here are so articulate and well informed. I just try to be myself and if I can just empathise with someone - well that suits me. I am wondering am I one of the ' positive brigade' well if I am I'm glad!

    I think Lyn is very well intentioned, but is probably misunderstood sometimes. Everything I have ever read is as I have understood from studies & data and she is factually accurate always. Summer & Julie, have always been themselves and have given me a great laugh and lots of support. It has been great to see new people join too and I hoped the reasurrance of the group would help.

    We can only be ourselves. Gosh, I can't really say too much more, as I feel I am now out of my depth here. I think I will back off a bit for a while and see how this matter can be resolved.

    I now dread the thoughts of my upcoming operation, I thought I could while away some hours, moaning & chatting and blogging on here, with a nice balance of thoughts.

    Good Luck All, Gina.

  • kind comments Gina x

  • I agree with you whole heartedly Gina.. when I first got diagnosed I was terrified and angry!! it was good to read that others had the same outlook, same fears & had read the same research papers!!

    Our emotional responses are all different (just like the way the disease affects us) I for one would much prefer an upbeat response ( a virtual hug if you will) which is the general mood of HU.

    I pray your OP goes well and you recover quickly!!

  • I am an intermittent blogger but I do enjoy reading the blogs. Some feel relevant to me, some don't, most fill me with compassion and sympathy, some have moved me to tears! Some make me realise that I could be a whole lot worse than I am!

    Bloggers are humans, expressing their feelings at a given point in time, negative or positive! It is sad that regular contributors feel the need to leave and I hope they return post haste!

    I have pasted the following from the top of the blog page:

    "Content on this site does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them."

    Hearing about alternative/complementary treatments is good, checking them out with the rheumatology team is imperative. The NRAS helpline is another reliable source of information and advice.

    Surely there can be no justification for abusive messages? We can agree to disagree politely!

    I hope the HU site continues.

    Tajke care

    Christine x

  • To be honest lve missed all the co-motion so done really know what's going on!

    However l do know that I've made a lot a friends on here to chat and message or just read and comment on there blogs.

    l cant believe that there has been so much uproar From one blog!

    l have asked many questions on here and used the blogs to share info with others.

    I've found the support invaluable in times when I've Felt low; and find it very sad that things have been taken to cause others upset!

    l have had advice given to me that I don't always agree with but if I am asking For advice then it expect to take the good with the bad.

    However most has been good and I an very thankful for it all.

    We need to all stop For a minute and think how upsetting this must all be for the NRAS staff who take the time and effort to have this site available for us all to use !

    l hope everyone can sort out there differences and carry on as the happy little Family we were before.

    Take care peace love and happiness to you all!

    Julie x

  • Could not agree more re how the staff at NRAS must be feeling about all this, so well said.

  • Hi all, having read through all this today it's made me quite sad, and at times angry.

    I joined this site to support me with RA, even though I'd had the disease for 16 yrs I still hadn't come to terms with it, and I never realised that until I wrote my very first Blogg.

    I have since found I could help and support others, or I though I could, matter of opinion now I suppose.

    I remeber the people who supported me on this site at that time and very sad to see they have now decided to leave. I thank you.

    New people have joined, newly diagnosed I have tried to give the most support to as I feel I had so much to give. Even though I say myself I have been through many tough times with RA, just like many of you. Times when I wanted to end my own life as I didn't want to go on. So when newly diagnosed people come on I totally understand their situation and my heart breaks for them.

    I won't apologise though for being one of the "stay strong and be positive" group. I will always swear by this, I think it is very important in any life situation, not just RA.

    I have only ever given advice gained from my own personal experiences of RA. I think that is important and thought that was what people wanted to hear, they don't have to read or take the advice that's up to them.

    Everyone is entitled to their opinion, if we all though and said the same life would be very boring, to me this is what makes the site.

    We are after all very individual, not only in RA bit in our personalities too.

    We should therfore respect each others opinion.

    Haven't we already got a fight on our hands with RA?? without fighting each other.

    I made some good friends on here, and I'm sorry you have decided to leave, I will miss you, the site won't be the same.

    Take care everyone

    mand xx

  • Im not entirely sure what has happened behind the scenes but from the sound of your post it was pretty serious?

    Mand, your advice and presence on this board for me has been invaluable (plus others like Lyn & Julie55). You ladies are absolute stars!!

    Keep posting and dont bother to second guess yourself before you do!! I dont post often but I lurk almost daily and dont know where my brain would be without this site, and the people whose regular correspondence eases my mind.

    THANK YOU

  • Thanks Joy that really means a lot.

    Nice to have positive comments, hope your feeling ok, not seen you on site for a while.

    Take care

    mand xx

  • Sparkle I do believe that everyone is respectful of each other.

    I have a close friend who recently berrated me for consoling her when she was upset.. she later told me that all she wanted to do was offload.. but not until she had confused and upset me with her aggressive response to what I believed was kindness.. LOL I now understand even more clearly that we are not all the same :) and we respond to people the way WE would like to be treated.

    Not everyone wants or needs 'advice' :D some just wish to offload - this might not be clear in a blog or question though so perhaps a (just want to offload) title might help in those cases :D.

    Others i've noticed are easily lead, (blogs are no different to the real world) they are not sure what to feel how to help themselves or what is 'normal' but in given time they WILL find their own status quo & sort the wheat from the Chaff with regards to the plethora of advice provided by this fab site.

    I pray daily, sometimes hourly regarding the twists and turns this disease takes as this helps me stay focused and happy. I'm not sure if others also pray so I leave those conversations off the main board and save them for the messages.. Most of the internet blogs I frequent in general arent the place for prayers so it actually never occurred to me to blog about it..

    Your post though has given me thoughts

    Cheers me dears!!

    Joy

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